Saturday, December 19, 2015

PERSISTENT SEXUAL AROUSAL SYNDROME

PERSISTENT SEXUAL AROUSAL SYNDROME


I KNOW, I KNOW. YOU PROBABLY GIGGLED WHEN YOU READ THE title of this chapter. And thought,
“Hmmm, too much of a good thing!” The problem is, the women who suffer from this syndrome—and
they do suffer—have heard it all before. And they are not amused.
Turns out wall-to-wall orgasms, all day every day, are no fun at all. And if you’re a little
startled by the frank speech of the women who have persistent sexual arousal syndrome, remember:
for some of them, this is a daily—hourly—concern, and they are grateful to have a chance to talk
about it at all.
In 1995, when Heather Dearmon was in her late twenties and began to feel as though she was
constantly on the edge of orgasm, she thought it was because she was pregnant and her fetus was
somehow putting pressure on her pelvis. But after she gave birth, the sensation only intensified, and
she found only one way to stop it.
“I would be masturbating morning, afternoon, and night,” Heather says. “When you’re
masturbating so much—I had to buy a vibrator because you get tired. Most of my time was spent
doing that. So I put my son (he was two at the time) in day care. And I would be crying while I was
masturbating, because, I mean, nobody wants to do that all day long.”
Heather and her husband, Jeremy, are now in their thirties. He sells guitars online from their
home in suburban Columbia, South Carolina. They’ve been dealing with PSAS for just about their
entire fourteen-year marriage. It’s rare, and doctors can barely diagnose it, much less cure it. In many
marriages, men wish their spouse had more sexual desire; for the Dearmons, Heather’s perpetual
arousal is torture.


A VERY PRIVATE HELL
“I have considered surgery just to cut everything off ‘down there,’” Heather comments. “I would
rather never have another orgasm for the rest of my life.”
Jeremy says that while Heather is the one at the mercy of her body, they are in this together. “The
women are the ones who are suffering. But it’s definitely mutual in a marriage. Both lives are affected
by it. It’s not a personal decision that the woman has made.”
This condition wasn’t even diagnosable until a few years ago. We were worried that we
wouldn’t be able to find women comfortable talking about it. We’d forgotten something pretty basic
to human nature: when you’re suffering, one way to feel better is to feel that you’re helping someone
else. Each of the women we talked to had lived in a very private hell, thinking this syndrome was
somehow her “fault.” Each of them wanted to let others know that it’s a medical problem—that if
there isn’t an immediate cure, there’s at least a community. We asked doctors who treat PSAS to talk
to their patients and ask: is there any chance you’d want to tell a television audience what you’re
going through? Some were comfortable using their whole names; some only wanted to be known by
their first names. We thought the topic was important, and if they were brave enough to talk about it,
we would be happy to use whatever names they gave us.
Dr. Irwin Goldstein, clinical professor of Surgery at University of California at San Diego and
head of Sexual Medicine at Alvarado Hospital, is one of the few researchers studying persistent
sexual arousal syndrome (PSAS).
“Every lecture I give on this, there’s always smirks in the audience,” he says. “‘Oh, I wish my
wife was like this.’ These are professional physicians.”
Goldstein is unequivocal: “You do not want your wife to have this. The genitals are aroused
twenty-four seven, three hundred and sixty-five days a year.”
Women who have PSAS, he says, can’t concentrate or work. Anything that moves or vibrates
will lead them into orgasmic release. The process of orgasm will tend to temporarily rid them of their
engorgement. However, the state of being “on the brink” soon returns.
“Ice is very common,” says Goldstein. “We have a woman who ices a condom and puts the
condom in the genitalia to basically survive the day.”
It’s important that you understand: PSAS should not be confused with what people typically
think of as nymphomania—an uncontrollable and insatiable desire for sex. Goldstein says that sex is
the last thing that is usually on the minds of women with PSAS: “They are totally focused on their
genitalia. They have no interest in sex, their body is playing a trick on them. They can’t be productive.


They don’t know where to go for help. [They] are even afraid to tell people that they have PSAS for
fear that they’ll think they’re perverts.”
All types of women are afflicted. “We have professional teachers,” says Goldstein. “If these
women announced that’s what they had, other teachers, or parents, wouldn’t want their daughters and
sons to be taught by a sexual ‘deviant.’ We have professional physicians, attorneys. We have artists,
writers, and moms. I would venture to say that around the world there are thousands of women with
PSAS.”
Most doctors have never heard of PSAS, which was only isolated as a medical condition in
2001. Before that, doctors and patients had no way to define it. Goldstein now classifies it as
“spontaneous, intrusive, and unwanted genital arousal, consisting of throbbing, pulsing, or tingling
without the person’s sexual interest or desire.”
Goldstein says that one of the most difficult aspects of the condition is that most women suffer
alone—or think that they are the only ones in the world with persistent, involuntary orgasm.
“How would you like to be in a situation where you had absolutely no control of the reflex?”
Goldstein says. “It activated whenever it wanted, wherever it wanted, and you were walking around
in a situation with engorged genitalia on the verge of having an orgasm in the middle of a place that
was absolutely not private? Most women who have PSAS don’t even know they have it. Or that
there’s help for them.”
Goldstein likens the sexual reflex to the bladder reflex. Babies have an uninhibited bladder
reflex and wear diapers. As they grow into young children, they learn to control that reflex. We come
to understand that it’s socially inappropriate, and messy, to wet one’s pants. It’s the same, Goldstein
says, with sex: “When you’re interested in sex, when you’re in the appropriate intimate situation, and
the time is correct and you’re with the right person, you activate the reflex.”
Heather says that Goldstein’s bladder analogy is apt: “It’s like having a really, really full
bladder. And you know the way you think about, when you have a really full bladder, you just want to
be able to go to the bathroom and have relief. You just want some peace in your body.”
Heather kept trying to tame what she called her “beast.” She says it completely disrupted her
life, her social relationships, and her sense of herself. She tried to focus on other things aside from
her genitals but found that impossible. She stopped going to church, shopping for food, traveling.
“I just couldn’t do anything,” she says. “There was one time for me where it was really
unbelievably bad and we were on a really long trip with family. And I actually went into a public
restroom and masturbated to make it go away. It was absolutely humiliating and degrading.”
She decided there was only one way out. “I knew I was going to commit suicide,” she says. “I
mean, it was that bad.” When she saw that her thoughts were taking that route, Heather became so
frightened that she would lose her mind or take her own life that she committed herself to a
psychiatric hospital.
Her humiliation and despair were complete when, in the hospital, surrounded by medical
professionals who were supposed to be trying to help her, Heather says, “the nurse came in and said,
‘Honey, I wish I could stay home and masturbate all day long.’ I also had one doctor suggest I become
a lesbian.”
“I’M NOT ALONE”
It was by a stroke of luck that one day Jeremy discovered a magazine article that described his wife’s
symptoms exactly. Jeremy quickly showed it to Heather: “She immediately started crying and [said]:
‘Oh, my God, I’m not alone!’”
Heather had found the upside: other women had PSAS. The downside? There is no cure for the
condition. Goldstein and others in the field say it can be treated, however. They’ve experimented
with treating PSAS with antidepressants. Heather takes Paxil now to “reset” her sexual reflex. And
while it doesn’t work for everyone, the drug has reduced her symptoms to a more manageable level.
Any hormonal change can trigger PSAS—menopause or, in Heather’s case, pregnancy. In some
cases, Goldstein has even treated menopausal women for PSAS that began when they simply changed
their hormonal therapy. But ironically, it is sometimes the very type of drugs that Heather is now
taking to treat her symptoms—antidepressants—that triggers PSAS in others.
Although PSAS occurs in the genitals, doctors say that it is regulated by the central nervous
system. “Clearly, drugs or events such as pregnancy and menopause affect the central nervous
system,” says Goldstein. “Millions of women take antidepressants, and one of the largest side effects
is sexual disorders. We recognize that inhibitory neurotransmitters, such as serotonin and the classic
antidepressant agents, inhibit sexual response. And we recognize that dopamine is an excitatory
neurotransmitter, and agents that increase dopamine can increase sexual function. Parkinson’s patients
who take dopamine will have improved interest and orgasmic potential. So we understand that.”
That is about as much as researchers using antidepressants to treat PSAS do know, Goldstein
cautions. He says that the repeated and constant need to orgasm could be “visualized” as a form of
recurrent seizure activity that activates in an area of the brain without volition. His patients’ MRIs
and CAT scans, however, have revealed nothing. Goldstein adds that there has been one link
established in the medical literature: women who stop taking antidepressant medications sometimes
begin PSAS. Indeed, a paper published in the Journal of Sexual Medicine reports that a woman
polled members of her support group for PSAS—60 or 70 percent believed that their PSAS began
with sudden discontinuation of antidepressants.
WHEN YOU CAN’T EVEN UNDERSTAND what causes a syndrome, a cure is elusive. “I don’t think
pharmacologic management is going to be the long-term answer,” says Goldstein. “I think especially
those who have virtually no inhibition of this reflex live a complicated life and are the worst off.”
Goldstein says the link between the inability to fully empty the bladder and PSAS may help
doctors treat the disorder. “One of the things women patients don’t tell us, but that we get out of doing
a detailed history, is when their genitals are engorged, it’s difficult to urinate,” Goldstein notes.
“They never empty their bladder; they hardly ever go to the bathroom. When they do urinate, instead
of it being a full stream, it’s short and staccato. That’s because their tissues are engorged. Their
pelvic floor is contracting. One idea is to take women who have the voiding dysfunction and see what
effect pelvic neuromodulation has on their PSAS.”
What is pelvic neuromodulation? Patients lie flat on an examination table. A pillow is placed
under the pelvis; the lower back is anesthetized, and a needle and a wire are put directly into the
opening in the spinal cord where the nerve root S3 comes out. Electricity runs into the wire to
stimulate the nerve. Goldstein says women with overactive bladder function who undergo the
procedure say, “Wow, I don’t have to go to the bathroom anymore.” He says that the hope is that
when they have the wire fired for them, women with PSAS will have a similar response. The
engorgement in their genitals will decrease, and they will once again be in control over their state of
sexual arousal.
That is, as much as any woman (or man) is ever in control. After all, the relationship of the
physical and the emotional, that combination we call female “desire,” is something doctors have
never been able to quantify. How much of a woman’s sexual arousal is hardwired in the brain, in
other words is physical, and how much depends on the relationship, the emotions involved?
Physicians would love to know, especially after 1999’s bombshell report in the Journal of the
American Medical Association indicated that 43 percent of American women experienced sexual
dysfunction. The push to study it (to test Viagra in women, to test hormone creams) hasn’t yet
revealed what doctors can do about it.
BACK TO PSAS and the attempted treatment of this very physical problem—it seems that
neuromodulation sometimes has no effect. Nancy Austin tried it. “I saw a local vaginal specialist,”
says Nancy. “And he’s the one who told me it was the pudendal nerve which was being
overstimulated. So I had three pudendal nerve blocks, which are extremely painful, and they didn’t
even work.”
Still, Goldstein says, he thinks the key to controlling the disorder may be neurological treatment
—with the addition of a therapy that fell into disrepute in decades past: electroconvulsive therapy.
Doctors throw a surge of electrical energy through the brain and nervous system, causing a seizure,
hoping to “reset” the brain at normal levels. It was called “shock therapy” or “electroshock” in the
1940s and ’50s, and seen as a cure for just about any desperate psychological condition, from bipolar
disorder to schizophrenia. Later it was widely discredited and pretty much discarded as a treatment
option. In the past decade or so, however, doctors have tried it again in limited cases, and found it
actually has medical benefits for some with clinical depression.
“We have a woman who was suicidal and very depressed and, just for the indications of suicide
and depression, underwent electroconvulsive therapy,” Goldstein says. “She had PSAS, and
miraculously she emailed me that her PSAS was under control after the electroconvulsive therapy.
We don’t recommend that people go to that extreme, but it was evidence to me that by her resolving
her PSAS with a neurological treatment—electroconvulsive therapy—we were able to control this
horrible syndrome.” He notes that therapy, to remain effective, has to be repeated on a regular basis.
Some women find that doing exercises like the Kegel—in which they squeeze the pubococcygeal
and the vaginal muscles—provides relief.
There are different types of PSAS. Emily, another woman suffering from PSAS, told us that
masturbation doesn’t really alleviate the discomfort of the syndrome. “For me, stimulation, none of
that would work for me, because [my condition] is more internal. I need to do the Kegel,” the
exercises familiar to postpartum women—they’re often used to increase bladder control.
“I need something to get it from a different angle: an internal way of working and massaging,”
Emily adds.
Women with PSAS often have trouble sleeping. Heather says she was often up, masturbating in
the middle of the night. “I’d be asleep for a couple of hours and then [the sensations] would wake me
up. And I would have to masturbate all over again,” she says.
Lauren, another woman with PSAS, says: “I don’t sleep for days sometimes, maybe an hour at
about five in the morning. There [have] been nights when I’m walking, pacing in my bedroom when
it’s really strong, and I just want to die. I just want it to stop.”
“Normal people often have sex just before going to sleep and it relaxes them,” says Goldstein.
“While sleeping, their genitals are inhibited, they have the baseline flaccid state of genital arousal.
Can you imagine how difficult going to sleep would be if you constantly had an erection or your
clitoris or labia were constantly engorged to the point where it’s just ready to undergo orgasmic
relief?”
HOW ABOUT MEN?
This is primarily a female condition, but Goldstein estimates that there are also thousands of men who
have a similar syndrome—no control over their erections. “We’ve done a little more research on the
men [because] we have a longer history of treatment with men who have sexual problems,” says
Goldstein. “Idiopathic recurrent prolonged penile erection would be the equivalent of persistent
sexual arousal.”
That’s a little different from something called priapism, named after the Greek god of Eros,
Priapus. Priapism is unwanted and prolonged engorgement of the penis that lasts for more than four
hours, and it’s considered a medical emergency because blood can’t circulate back into the body. The
complications can include blood clots and gangrene.
The treatment for these male disorders is unpleasant, to say the least—a syringe loaded with
insulin injected into the penis to release adrenaline. The adrenaline significantly contracts the muscles
of the penis and the erection goes down. “It’s not that much fun to stick a needle in your penis every
day to make it go down so you can go to work,” Goldstein notes, adding that it’s often difficult for
people with sexual problems to get the help they need, even today when Viagra has become a
household word and is used by millions.
The ideal way to work with PSAS is a coordinated multidisciplinary therapy, says Goldstein,
and you have to treat somebody else in addition to the sufferer. “We would also work with the
partner, we would work with their anxiety and stress and depression.”
This, of course, is the ideal. The public spotlight on Viagra and erectile dysfunction
notwithstanding, the sexual problems of women (and many of the lesser known problems of men, for
that matter) are looked at askance, perhaps even ridiculed. Women who seek help for PSAS usually
have a very different experience than the multi-pronged approach Goldstein outlines above.
“One woman described to me being in the doctor’s office, telling the nurse practitioner who
comes in first what her problem was,” says Goldstein. “The nurse practitioner goes outside—she
hears laughter. Men who have erection problems are laughed at. We have HIV medicine, sleep
medicine, pain medicine, and family medicine. It would be good to have sexual medicine as a
specialty. Someone who has a sexual problem should find a health-care provider and a facility that
has multidisciplines to take care of people who have sexual problems. There wouldn’t be any
laughter under such circumstances. It’s my dream to see that this comes to fruition, but we’re just not
there yet.”
IT’S WHAT WE CHOOSE
In today’s world, people struggling with PSAS do the best they can. Heather and Jeremy remain
committed in their marriage through the trials and tribulations of PSAS.
“It’s not like he couldn’t satisfy me sexually,” says Heather. “It has nothing to do with him.
There is just something going on in my body that I have no control over. He helped me by staying
away from me. He helped me by learning rejection. That hurt both of us—but I didn’t even want him
touching me.”
“We can only be affectionate at certain times,” says Jeremy. “I need to take that easy.”
“Sometimes I have to stop him from kissing me,” says Heather with regret. “Stil

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